Scleroderma Information » Scleroderma » Workplace Considerations
Question:
On Sat, 19 Jul 1997 12:24:18 -0400, Kate Nance <kna…@epix.net> wrote: >How terrific it is that you are concerned about your employee. I’m sure >she’s going thru a very dificult time – thank goodness you are on her >side. My employers were very suportive of me and I’m still grateful.
I’m glad I’m able to provide more than just sympathetic support. She has worked for us for 10 years, and hearing her diagnosis saddened me (like most people, I knew very little about scleroderma, with just the TV movie about Bob Saget’s sister as background.) Reading up on it since then has been an eye-opener. I am not as "connected" to Vicki as her family, and yet I find myself feeling very sad about the whole thing. I can’t imagine the impact it has on her. >I was allowed to have a little space heater in my office, and I also had >a blanket I would sometimes take to meetings. They got me a special >Microsoft natural keyboaord which was very easy on my wrists and hands.
These are no problem for us (in fact, she has a heater under her desk already, and I’ve put in a request to have the A/C re-routed so it doesn’t blow directly into her workspace.) Is there any reason to eliminate typing early? Or is it determined by the amount of pain involved? She does a fair amount of data entry (she is a customer service representative and uses a computer to enter orders, look up information, etc.) >I had good days and bad days. On a good day, I could walk all over, but >on a bad day, even walking to the ladies seemed too far. So don’t expect >a given problem to be consistent. If she has energy problems, a parking >spot close to the entrance might help her save her enregy.
That’s good information … thanks. We have handicapped parking available, and I’ll see if we can allocate one of those spaces to her. She finds it hard to drive home … she has about a 45 minute commute … when she leaves at 5pm. So she’s asked to try starting at 7:30 and leaving earlier. Is the fatigue related to stress, or is it simply a by-product of the disease without a controllable cause? >Encourage her to get in touch with us on line here. Our on-line SD >community is growing everyday and offers all kinds of support in many >different forms. On my website you will find some links on disability in >the workplace
Thanks, I’ll check out the links. She isn’t on-line, although I may be able to get this newsgroup bridged into her email at work. Because she hasn’t had her meeting with the rhumatologist (sp?) yet, and doesn’t know which type of scleroderma she has, I haven’t provided too many of the stories I’ve downloaded from web sites to her. I’m not sure how much her doctors have told her, and I don’t want to interfere with what they are doing. >I think one thing to remembe is that all of us with SD are different. No >two cases are alike and what is hard for one person might not be a >problem for another. Your emplyee will have much she has to work out >over the next year or so, as she discovers what helps and what doesn’t.
I’ve expressed to her that we want to help, and that she shouldn’t be shy about asking for whatever accomodations she needs. She is an independent person, and I think she feels awkward thinking about those requests. In any case, thank you for the insights! — Providence protects children and idiots. I know because I have tested it. – Mark Twain —
Response:
Are you eligible for disability payments from SSDI? Have you considered applying? Just becasue you are not disabled due to hand or joint deformities doesn’t mean you are not eligible. Many of us are disabled due to weakness and lack of energy, just as you describe. Kate – Hide quoted text — Show quoted text -mythyme wrote: > I only wish I had an employer like you. I have been searching for a > job > I can do for 3 or more years and have not succeded yet. I am now > working at a job that does not pay enough to make a living and the > work > is very physically demanding. I am exhausted most of the time but > have > to keep trying. My problem is no previous work history and becoming > ill > right after I needed to enter the work place. From my personal > experience, my symtoms change from day to day and sometimes hour to > hour making it impossible to know and plan ahead. I am hoping to find > work I can do at my oun hours preferably at home. I then could do the > work when I was feeling well and thus be better for me and I could do > better work in less time rather than struggling when I am not feeling > well.
Response:
In article <33d22f97.776324@news>, fha…@pe.net (Frank Hagan) writes: >Is there any reason to eliminate typing early? Or is it determined by >the amount of pain involved? She does a fair amount of data entry >(she is a customer service representative and uses a computer to enter >orders, look up information, etc.)
I do less data entry than I used to, but still do a lot of what you’re talking about. It’s going to depend on her and how things progress. I sometimes think that staying an active typer has maintained more flexibility in my fingers than had I used them less. > We have handicapped parking >available, and I’ll see if we can allocate one of those spaces to her.
Tell her to talk to her doctor about getting a placard. I get a temporary one every winter to get out of the cold as quickly as possible. Many folks on the arthritis newsgroups talk about using handicapped placards to reduce the hike in from the parking lot at work. >She finds it hard to drive home … she has about a 45 minute commute >… when she leaves at 5pm. So she’s asked to try starting at 7:30 >and leaving earlier. Is the fatigue related to stress, or is it >simply a by-product of the disease without a controllable cause?
It’s common in inflammatory diseases, and it’s also common that the fatigue lessens with treatment. Until she gets the right treatment combo, you would be wonderful to work around it for her. I still have bouts with it, and I’m best at 7:30am and pooped by 3:00 during them. >I’ve expressed to her that we want to help, and that she shouldn’t be >shy about asking for whatever accomodations she needs. She is an >independent person, and I think she feels awkward thinking about those >requests.
Yep, and think how she thinks it looks to ask your BOSS for this stuff, even if he/she is a friend. You are doubly vulnerable because of the disease about your income and health insurance and yet it’s real obvious that you’re not performing up to "100%" and won’t be for a long time. Scary. It’s a really difficult period for her, and you are doing well to just let her know the company stands behind her, whatever she needs, then step back and let her find out what she needs. Those of us still working would love to hear an employer’s perspective on concerns, too. How does this impact your company? Are you concerned about the situations where you may have to cover her position for periods of time? How much accomodation can you do before it’s unfeasable? Amie —————– There’s no waiting worth the misery And there’s no wanting worth the tears… —————–
Response:
>Is there any reason to eliminate typing early? Or is it determined by >the amount of pain involved? She does a fair amount of data entry >(she is a customer service representative and uses a computer to enter >orders, look up information, etc.)
As with everything else, let her be the guide. She may or may not have difficulty typing (I don’t, but others with scleroderma do). As we’ve been saying, everyone is different. She may have contractures that make it difficult to type, occasional finger ulcers, etc. Vicki may want to continue her duties pretty much as before, hesitant to ask for special privileges or to "stand out" as being "sick." In some offices, co-workers might resent someone who "looks fine" but is given special consideration. If this is the case, office workers also need to be educated about scleroderma and similar chronic diseases. You probably know your office situation the best. > Is the fatigue related to stress, or is it >simply a by-product of the disease without a controllable cause?
Fatigue is very much a part of the disease, especially during the first couple of years and during flare-ups of symptoms. It’s a rare day that I don’t feel the need for a nap (I was diagnosed 8 years ago). There is a medical explanation for the fatigue that someone else here online may be able to answer. Stress, too, also contributes to fatigue. Fatigue with SD is real, though, not something that’s "just in your head." I think you deserve "Boss of the Year" award for your kindness and concern!! Hear, hear!! Ronni
Response:
mythyme writes: > My problem is no previous work history and becoming >> ill >> right after I needed to enter the work place.
Are there SSDI benefits for people who’ve never worked? Amie —————– There’s no waiting worth the misery And there’s no wanting worth the tears… —————–
no comment untill now